Crohn’s: What being a young person with disease is really like

Prior to being hospitalised for Crohn’s disease in 2016, I suffered for an extensive amount of time with chronic abdominal pain that cause me agony, bought me to tears and caused me an extensive amount of trouble. I had blood present in my faeces, went to the bathroom numerous times a day and became extremely weak. I didn’t realise at the time how bad these symptoms were as I was used to it – I had been suffering for a long time, and I had just graduated Year 12 and was set to start studying at the University of South Australia when I was struck down by this debilitating disease.

As terrifying as it sounds, I was basically dying as my body was attacking itself from the inside. My body wasn’t absorbing all the vital nutrients we all need to live – they were just going straight through me. As my intestines weren’t working properly or doing their job this made me lose weight and become lifeless. I was mentally, physically and emotionally battling and fighting a medical condition in my body which I had no idea about until it got all too much and I crashed.

In March that year, the pain reached a climactic point – I was crying and screaming in extreme agony so my mum and I went by ambulance to hospital where I was admitted for a few weeks. I was checked from head to toe as I underwent multiple tests, scans, X-rays, ultrasounds and surgery to discover what I truly going on. After the surgery they found severe Crohn’s/Colitis to over 85% of my intestines. This is an intestinal and bowel disease that inflames and ulcerates my intestines. To treat my condition, I had to take steroids and as result my body and brain shut down. As my condition was so severe and I was so weak I lost all of the basic abilities we have that we take for granted. I lost the ability to walk, talk, think and feel and I had to use the little strength I had to fight this disease.

When I was diagnosed, I felt numb. It was such a traumatic experience I wasn’t sure what to think when the surgeon was explaining the diagnoses. I was afraid as I didn’t know it was or what was happening to my body and I was so scared when I heard the words “lifelong condition.” Nothing can explain how a person feels when they are diagnosed with any type of condition as it’s life-changing and forces you onto a huge mental, physical and emotional rollercoaster. Mind you there is a silver lining to this as it can pave the path for a new future, a gift in disguise.

Still, as I lost the abilities to walk, talk, think and feel I couldn’t do anything for myself and I was in a wheelchair it was heartbreaking for not only me but my family and friends, too. My mum had to do everything for me – she sat with me, showered me, took me to the toilet, fed me, talked with me and taught me how to walk again. I had all my independence taken away from me as I had to rely on everyone else to help me live. Until someone has their independence taken away from them in some form they will never understand what this can do to a person. It’s a testament to the courage, will and strength of our character and personality to pull through – which can feel impossible at the time. What was also difficult of those first few months of being diagnosed and dealing with the side-effects of the disease and everything that came with it, was how everyone told me it was a miracle to have pulled through, and congratulate me on how strong and positive I’d been. Sure, I put on a brave face in front of others but deep down I was battling with trauma, fear, PTSD, grief and anxiety. I knew I was strong but you can only be strong for so long until you crumble. But by the same token, you have to crumble to find out how strong you are; it was an uphill battle against Crohn’s, but I was determined to push through it as this wasn’t going to beat me.

One day when I was at home I saw an advertisement for their colour run on Facebook. It sounds like an innocuous thing to happen – I’m sure thousands of people saw it, too – but the event was coming to Adelaide, and I knew I wanted to participate in it.

I told my mum that I was determined to sign up, and my goal was to walk 5km. She agreed and we kick-started the rehabilitation and training together – she taught me how to walk again around the house and as I regained this ability – plus my coordination and balance – we went for short walks and increased these as I built up my strength and stamina from being so weak. I pulled myself up and strived for greatness in achieving my goal, and by focusing on my goal, I gained passion, aim and focus. The running event came and I successfully completed the 5km with my mum by my side. It was an incredible event, I loved every moment of it – all I could do was smile, laugh and have fun the whole way though.

Now, I’m travelling with the Aratis team (who organises these events) to join them for ROC RACE, which comes to Sydney on the 10 February, this year. Being on death’s door made me appreciate life so much more. I live my life day by day, living in the moment as that moment is the only thing you are guaranteed – none of us know what might happen in the future. I want my life to be memorable and meaningful, by enjoying every minute of it and living with purpose and passion.

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